Abby ended up having a new mask being made on Friday, but they did not use it this morning for her treatment. Dr. Mansur said that he was happy that they did not use it or have to use it because they would then have to run an entire new simulation which would push her treatments back, and we do not want that! There are only four more radiation treatments left, and then we will immediately go into her year long maintenance program. The doctors from her clinical trial said that the day after last radiation, she will start her chemo treatments which will be 12 cycles of 28 days straight. After the 28 days they will do the next scan. We will have to come up every two weeks to meet with the doctors and also to refill her chemo medicines. We will be able to get her blood drawn at home and we will probably do that on Wednesday or Thursday so that they can get the blood up to Children's Hospital so that they can get the work done, which will make our bi-weekly trips a little easier.
Abby continues to amaze us with her progress and joyful spirit! We noticed today that her cheeks are not as hard as they have been, which is nice! It was good being able to squeeze her cheeks again and having some give in the cheeks, and not being rock hard. So we are definitely hopeful that now that the steroids are being slowly weened down, that her cheeks will return to normal and she will not be as puffy as she is now.
Today, Mary-Beth was up here with us and was able to go up to the Siteman Cancer Clinic to see for herself what Abby was going through. She came to the back with us and saw them give her the "sleepy milk". We then went out and watched all of the techs on the monitors as they got Abby into position and put the mask on. Mary-Beth told us as we were walking back to the waiting room that she didn't realize how much Abby went through each morning. When Abby woke up from her anesthesia as her normal "bear" self, Mary-Beth got to see that as well. Maegan had told her before we went back there that if it bothered her to see Abby like that, she could go back to the lobby with Ms. Stephani (who is our new friend who works the reception desk) and she would watch her until Abby was ready to go. Mary-Beth held in there for a little while and tried to help by holding Abby's hand, but after a few minutes, told Maegan that she was going to go back to the lobby.
We told Mary-Beth that when Maegan and I took Abby back for her first treatment, it bothered us quite a bit and that we cried in the waiting room, so that it was okay for it to hurt. She seemed to like that it bothered us too, and that she was not the only one.
Once Abby was back and the bear was returned, we all went to the Science Center. It was a great time and we all had a blast. Emily did not like the life size Tyrannosaurus Rex that was moving and seemed to be watching her. She was up on my shoulders when we walked by, and Maegan noticed that she had her eyes closed and her hand over her eyes. Emily then reached down and grabbed my hand and pulled it up to her eyes as well and covered her eyes with my hand. Too funny! The rest of the day, anytime we got anywhere near (or Emily thought that we did) to the dinosaurs, Emily would squeeze my neck and tell me that she would protect me from the dinosaur. My hero!
We then got the girls their own new Build-A-Bear, Mary-Beth got a puppy, Abby a pink bear, and Emily a multi-colored bear. They were very happy with their new babies. Unfortunately, Mary-Beth had to go back home tonight so she could get back to school, but we will be able to see her again on Friday when Abby rings the bell! It will be a great day and I cannot wait!
We'd like to invite you to read Abby's Journey from the beginning. We hope that her story may help a family who is facing the same battle with DIPG. We are praying for a cure and are praying for every child who is diagnosed with cancer.
This is Abby's story.
This is Abby's story.
2 Timothy 1:7
For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.